DAY 11

Today is Day 11 and I woke up and only took regular tylenol along with my last dose of prednisone. I don't really feel anymore swelling. Sometimes I have pain or burning, but mostly it's just an uncomfortable feeling or sometimes a scratchy feeling. I feel like my voice comes and goes and I just have to be aware not to push it. I ate so much more food today. I ate mashed up meatloaf (without ketchup or salt), mashed potatoes, pudding, a chocolate banana smoothie, a yogurt, and water. I'm feeling more and more like myself, but know I still have a ways to go. The hardest thing today has been trying to force myself to slow down eating. Because my mouth and tongue feel better I'm rushing when I eat and I'm not ready or able to swallow as quickly or as pain free as normal and sometimes I've rushed it. I also tried to eat some corn, but found I felt it getting stuck in my throat and stayed away from it. I'm able to talk, but feel like my voice doesn't sound like mine quite yet. My throat looks to be healing more and more and I'm excited that I'm continuing to feel well and that I'm about (what I think) is half-way there! I love how smooth my cheeks and hair feel!

DAY 10

Night 9 I was able to sleep through the night, but I woke up in so much pain. I immediately went for my vicodin. Day 10 I was able to eat some more foods! I ate some shepard's pie ok and even had some frosting and caske! I was so happy and so hungry! My main food still were pudding, but I was happy to be expanding out! I also felt my scabs for the first time. I think I swallowed a piece on day 10, but that it then re-scabbed later. I think you can see it in the pictures. Day 10 I also moved off my recovery position on the couch and back into my bedroom since I could sleep through the night. I also started taking my vicodin about every 6 hours, even a little more and did ok. Tomorrow would be my last day of prednisone as well. I continued to get better at talking and I thought my tongue was feeling better. However, as I ate or especially when I tried to eat a banana my tongue immediately got sore and I couldn't move it very much again and therefore couldn't speak well anymore. I felt a exponential recovery effort coming, but still had to be careful not to push it too much.

DAY 9

Day 9 I really felt the prednisone was working. My tongue hurt to move, but it finally felt normal in my mouth. In my daily picture I also realized how much smaller my ulvula (thing in the middle hanging down) was. I felt I could feel and see progress and was so happy. I tried to talk more, but felt the more I talked the less I could talk. Day 9 my diet consisted of my usual swiss miss pudding, cold plain pasta, and I tried a smoothie without ice cream. I was able to swallow the smoothie ok, but it hurt and burned a little afterward.  Day 9 I finally slept through the night for the first time as well.

DAY 8

Day 8 I finally made my real first venture out of the house. The day before I left the house for about an hour to see a friend in town. I had a hard time talking and it was frustrating. I think it made me realize I wasn't feeling as good as I had convinced myself I was. Day 8 I went to a local hockey game. I started to be able to talk more normally, but only in a very quiet almost kid-like whisper. I could swallow water without having to think about it, but it hurt. I began to eat more puddings and jello. I also was beginning to become so hungry. It was probably a combination of not eating for a week and also being on the prednisone. I was dying to eat and I felt there was nothing I could eat. I went grocery shopping with my Dad and we spent close to an hour looking at ingredient lists. I never realized how many products have salt in them! I was also sleeping close to 4 hours at a time at this point, but still needing the vicodin every 4 hours. I continued to be on the prednisone.

DAY 7

Day 7 my redness in my cheeks started to decrease. I'm not sure if it was less lotion use, being more hydrated, a combination or something else. My tongue still hurt like hell and I was still very swollen and sore. However, I was able to start eating cold plain macaroni. I had about a 1/2 cup and it took me an hour, but I had it. I was able to swallow more water. I found myself spitting more and more as well. I also was dying to brush my teeth, but was advised to wait a week by many.

DAY 6

Day 6 I was able to open my mouth a little more for a picture. You could start to see my scabs form. In the picture you can also see how red my cheeks were. I wasn't feeling well. However, on day 6 I started to be able to eat again. I was able to eat two puddings! I finally felt like I was hydrated enough that I wasn't feeling bad side effects from the vicodin most the time and I was able to take a full shower without a problem.

DAY 5

Day 5 I was still extremely dehydrated, but was beginning to feel the effects of the prednisone almost immediately. Slowly, I was able to swallow more water. I still didn't eat anything on Day 5, but I was able to at least get water in me and suck on ice chips. The doctor had recommended chewing gum if I could to loosen my mouth, but I couldn't yet. I was still taking vicodin every 4 hours. I also started to feel my face be more flushed and hot. It didn't feel like the scarlet fever rash, but I was nervous maybe my infection wasn't gone. However, I was also putting on lotion as my skin was dry and wasn't sure if it was red because of the lotion. I decided to only use the lotion once every other day to see if the redness decreased. My parents were ready to take me to the hospital if the redness didn't go away or if I showed any other signs of infection. Luckily, I didn't experience other signs or symptoms and as the prednisone kicked in I began to feel more hydrated and less loopy from the pain medication.

DAY 4

Day 4 I awoke in excruciating pain despite the humidifier and keeping on top of my meds. I couldn't swallow anything. I would put water or even ice chips in my mouth to melt and the water just sat in my mouth or would fall out of my mouth. I couldn't talk at all. My tongue hurt more than my throat, but both were painful. I didn't consume any calories all day. Later in the day the doctor's office called to check in on me, but because I couldn't talk I couldn't get the call. I waited until my Mom got home from work and had her call. At this point I started to keep paper and pen with me so I could communicate. I actually would recommend a white dry erase board! I was feeling very dehydrated. I tried to take my first shower and I felt ok in the shower, but within a few minutes I felt disoriented and that I couldn't stand. I was unable to finish my shower. I began to worry that I was going to have to return to the hospital for IV fluids. I knew how important it was to get fluids in me, but I honestly couldn't find a way to do it.

When my mom spoke to the nurse the nurse relayed questions to me and asked if I couldn't stay hydrated due to pain or swelling or both. I felt it was mostly swelling, especially the swelling of the back of my tongue. She sent in a script for prednisone. If the prednisone didn't work and help me to get liquid and calories in me I was going to have to go back to the hospital. There aren't pictures from these few days because I was so swollen you couldn't see anything in my mouth and I even had difficulty opening my mouth.

I also found that the first few days an ice pack on the outside of my neck didn't do anything, but during this time it helped with my pain and swelling. I recommend putting an ice pack wrapped in a towel and holding it on each side of your neck.

DAY 3

Day 3 brought on more pain and more swelling. I couldn't really get any food in. I think I had a pudding and one spoon full of strawberry jello. I tried to suck on ice, but had a hard time doing so. I had the humidifier on previously during the day and night, but on day 3 I felt myself wanting to cough like stuff was in my chest. I started to only sleep with the humidifier on. By the time night time came around I was beginning to feel more pain and more dehydrated.

DAY 2

Day 2 I still couldn't believe how great I felt. I literally felt like poison was removed from my body. My throat pain and swelling increased. My tongue felt immobilized and like it wouldn't fit in my mouth. My ability to talk began to decrease. I continued to take my vicodin every 4 hours. I called it "a shot." I tried to eat jello and had a hard time getting it in my mouth and to go down. I felt I was constantly spitting and expecting blood or yellow mucus, but each time it was just spit. My tongue began to hurt so bad and I couldn't move it forward as the day went on. It didn't hurt too much to swallow water, but I had to consciously think about swallowing.  I spent the day mostly waiting for the worst to come.

DAY 1

When I got home from the hospital my parents filled my prescription for the liquid vicodin. I was surprised at how much I was given (but, it was necessary!).

I made myself a place on the couch and set up the humidifier, a box of kleenex, a trash can, bottles of water, cup of crushed ice, and medication on my night stand. I sat and slept in an upright position.

I forced myself to eat as much crushed ice and drink as much water as I could. I was warned by the doctors and my others that because the pain gets worse it's important to get fluid in when you can. I hydrated as much as possible.

My biggest complaint was that my tongue was so numb and felt so big in my mouth. I felt I couldn't move it around. I was surprised that my jaw and mouth was not sore. My throat was uncomfortable, but I wouldn't say it was painful.

It's very important to take your medication religiously in the beginning. I could take a dose every 4 hours. By hour 3 I was already craving it for the pain most the time. Even in the beginning when the pain wasn't bad it's important to stay on top of it. It's a lot easier to be preventive then take it too late and suffer the pain.

That night I slept well sitting up, but woke up every 3 hours as the pain medication wore off. Once I took the medication I was back asleep in 30 minutes.

Hospital

My surgery was on a Friday, March 8, 2013. It was an outpatient surgery. My trip at the hosptial from start to finish was actually shorter than many ER trips I've made before and I was pleasantly surprised. Prior to surgery I was nervous, but nervous that my surgery would be postponed due to being ill. I knew the only way to get healthy again was to have the surgery. Once I got done with all of the pre-operative information, had my IV in, and was moved to the pre-op holding area I was ecstatic. 

On the day of surgery I still had my rash. The picture in my earlier blog with the hat was the night before my surgery. My throat pain had increased a little as well after I stopped the levaquin. I also felt I had some minor post-nasal drip. I also was nervous I would have a fever that would stop my surgery. It was about 99 at the hospital. 

Here is a Step by Step of my Day at the Hospital (I've tried to keep it as detailed as possible for those that have never had surgery) :

1. Registration

• Registered with the main desk, brought to waiting area. 
• From the waiting area I was taken with my parents to the pre-op room.

    2.  Pre-Op/Registration Room

• Reviewed information taken from previous phone call interview with hospital prior to my surgery. Reviewed my medications (brought a list with me).
• Changed into gown
• Vitals taken.
• Due to my history of MRSA was given a MRSA nose swab. (They hurt and are very uncomfortable.)
• IV put in.
• ID bracelet on
• ID bracelet with tonsillectomy written on it (other surgeries you can mark the area with a sharpie)

    3. Holding Area

• Speak to Surgeon, Anesthesia, Nurse
• Important to tell your doctors if you have any fake teeth, bonding, etc. A mouthguard is sometimes used in tonsillectomies and your bonding can come undone. The bottom of my front right tooth is bonded, but survived the surgery fine.
• Anesthesia noticed my rash (I'll get to this more later)

   4.  Operating Room

• Moved to OR Table
• Given Oxygen, then mask used to sedate you and knock you out
• Surgery took about 20-30 minutes I believe
• During surgery your tongue is clamped so don't be surprised to have tongue pain later
• no stitches, everything was cauterized

  5.  Post-Op Area

• woke up laying flat, had difficulty breathing, throat pain
• had an ice pack on my neck
• was cold and given more blankets (not unusual for me following surgery)
• given cup of ice chips
• given morphine for pain
• given liquid hydrocodone for pain
• felt very swollen
• my rash was already gone from my face!

  6.  Recovery Room

• brought to recovery room with my parents
• peed in the bathroom
• put in upright chair
• given more ice chips
• waited approximately about an hour to be discharged
• COULDN'T believe my rash was already gone! 
• wasn't put on antibiotics
• given script for liquid vicodin for 10 day supply
• told of things to watch for (bleeding, fever, etc)

  7.  HOME

I was home in no time and felt great. I wasn't in much pain. I could talk relatively well, although my tongue was mostly still numb. I was amazed how the rest of my body already felt better. You can see in the pictures I was very happy, but also swollen. I honestly had energy to want to work out or play in the fresh snow, but knew I couldn't. The next 48 hours weren't too bad, but then it got worse. This was one thing I wasn't used to recovering from prior surgeries. I had to get a lot worse to get better this time.

Grocery Shopping for the Future

My next post I will get into the steps of my hospital visit and tonsillectomy and then discuss my day by day recovery. However, I thought it was important to post first what I've learned in this process about what I could eat so that you can properly plan for after your surgery. If you can get your grocery shopping done the night before it helps prepare you and also makes it easier after your surgery.

One of the most important things I learned was that you NEED to look at the ingredient lists on EVERYTHING carefully! Many foods that you would not expect to be salty or acidic for example are. One mistake I made was having a Jello Pudding Snack. It burned like crazy. I looked at the ingredients afterwards and salt was a major ingredient! READ YOUR INGREDIENT LISTS!

Also, don't worry about where your calories are coming from. Having calories in you will help decrease side effects of your pain medications and also will help promote healing. Eat whatever you can. Many told me to expect to lose weight. I haven't even lost 5lbs, but this is NOT the time to diet. Don't be fooled either. The first 24-48 hours may not be so bad, but it gets worse. Be prepared and don't overdo it while your anesthetic is still working from the hospital. You'll pay for it later.

Most importantly, HYDRATE! Drinking water keeps your throat wet, less painful, and if you become dehydrated you'll experience more pain, have more adverse side effects from medications, and probably end up back in the hospital.

Things to stay away from:

• acidic foods (juices, sauces, some fruits)-they will burn like crazy
• spicy foods 
• salty foods (think of jumping in an ocean after shaving...now think of your throat!, even the littlest of salt bothered me a lot in the first 10 days!)
• crunchy foods (mouth may be too sore to chew, my tongue was too sore to help mush up even a banana)
• crumbly foods (particles can get stuck in your throat or scabs, can make you feel like you are choking)
• ice cream or thick smoothies or yogurts (if it's too thick you'll create more mucus in your throat, making it more uncomfortable, more difficult to breathe, and even more difficult to swallow)
• hot foods 
• extreme cold foods (sometimes in recovery these felt good and helped with swelling, sometimes it was almost like a brain freeze type pain in your throat)
• ice chips (suck on them, but don't eat or chew them, they can tear your scabs)
• be careful with fruits with seeds (seeds will get stuck in your throat and are uncomfortable)

Foods I could eat:

• Swiss Miss Butterscotch Pudding: By far the best and easiest thing for me to eat during my whole recovery. Has a taste, feels like a snack, perfect thickness/not too thick, no salt. HIGHLY RECOMMENDED!
• Plain cool macaroni, sometimes with butter.
• Gatorade 
• Jello (be careful to stay with small spoon fulls and away from more acidic flavors)
• Plain vanilla yogurt, light-not creamy
• By day 10 I was eating smoothies with 1/2 cup of vanilla yogurt, 1 1/2 cup of lowfat milk, 1 1/2 cup crushed ice, smoothie mix or 1 cup of fruit of choice (things I've added bananas, strawberries)
• By day 10 I could eat mashed potatoes, but was still careful of not having added salt.

Other things to buy:

• HUMIDIFIER-this will help keep your throat wet in the night
• BLENDER-a cheap one will do
• KLEENEX-you might spit a lot of mucus or cough up something or even bleed a little.I was surprised how much I went through.

Night Before Surgery

The night before my surgery I wasn't worried about my surgery as I've had a few orthopedic surgeries and I knew what to expect. I was only nervous that doctors might deem me too sick for the surgery and postpone it. The biggest thing to do before the night of surgery (besides not eating or drinking after midnight) is to enjoy your last full and solid meal for the next while!

I elected for Tacos. I wanted Tacos because I could have crunchiness, spiciness, warm/hot food, meat, etc. I figured all of these types of foods I would have to avoid for a while. I still recommend this choice if you like Tacos too!

Other foods I tried to indulge in the week before surgery were:

• french fries (crunchy and salty!)
• hot chicken wings (hard to eat and spicy!)
• chips (crunchy and salty!)
• chocolate
• peanut butter (thick!)

Basically, I tried to eat what I knew I wouldn't be able to (spicy, hot, crunchy, salty, acidic) food and drinks. I also tried to stay away from things like applesauce, pudding, yogurt, plain pasta, etc, because I knew that my diet would mostly consist of those items. Still, I wasn't as prepared for planning my caloric intake post-surgery.

Bottom Line: Eat what you want and tastes good to you and don't worry how healthy it is for you for your "last meal."

Diagnosis and Treatment for Recurrent Strep G

Diagnosis:

Every medical professional that got my overnight strep results back seemed surprised that I had such a "rare" form of strep. When I was treated for this rare form and medications decreased my symptoms and then the symptoms returned without antibiotics or steriods I knew I had found an answer for the symptoms I had been experiencing. I wanted nothing more to get my tonsils out ASAP. I began to do more research on my own and found that strep G is very rare. But, it can cause symptoms similar to lupus and cause scarlet fever. If you research scarlet fever or strep in general you will most likely be able to find that it is treatable and when treated there are no real risks. However, recurrent strep or any recurrent infection can cause longer term problems or more serious complications. I began to worry about my heart function and kidney function.  I'm not sure if it was the illness or the effects of antibiotics I was on, but leading up to surgery I also had an increase in an intermittent, but very rare heart murmur and decreased urine output.

I'm still not sure when exactly I came in contact with Strep G, but mono may have decreased my immune system enough to contract it and mono also helped to mask symptoms. 

A proper diagnosis also took a while due to the inability to find answers from a doctor. I truly believe keeping a diary of my symptoms, taking pictures of visible signs I experienced, and being stubborn and persistent in finding an answer may have saved my life.

Treatment:

While I have allergies to penicillin, amoxicillan, sulfa drugs, clindamycin, and azithromycin it made it difficult to find an antibiotic found to be effective against Strep G. Others may have recovered from a rare strep strain better than me because more effective medications were available to them. This most likely increased the uniqueness of my case. Medications that helped decrease or keep my symptoms at bay, but that did not rid me of the infections were:

• doxycycline
• levaquin
• medrol or prednisone

After unsuccessful treatment from different antibiotics it was inevitable that I needed a tonsillectomy.

Symptoms and Differential Diagnosis

Summary of Symptoms and Differential Diagnosises:

Persistent Symptoms:

• itchy neck rash (skin felt abnormal, not like acne or hives)--PICTURES BELOW
• butterfly rash (raised, red, flushed)--PICTURES BELOW
• EXTREME fatigue (example: slept 10-12 hours a night and awoke still exhausted unable to complete work)
• intermittent low grade fever (99-100)
• intermittent headache
• intermittent vision changes
• increase in nausea
• swollen lymph nodes
• swollen tonsisls --PICTUES BELOW
• hoarseness
• intermittent throat pain (typically L>R)
• increased weight gain (most likely due to inactivity and continued prednisone use)

Differential Diagnosises:

• recurrent mono
• lupus
• chronic pharyngitis
• GERD
• allergies
• chronic fatigue syndrome
• depression
• connective tissue disease
• hypothryroid disease
• scarlet fever
• recurrent strep A, B
• recurrent strep G

Background

Background: 
I decided to create this blog after others encouraged me to do so after I experienced a unique medical illness (recurrent Strep G). Before I was properly diagnosed I had difficulty finding information relevant to my condition despite seeking several doctors including my primary care physician, urgent care medical providers, emergency rooms, hospitals, an endocrinologist, a rheumotologist, and more. After, I was diagnosed I found it difficult to find useful information from other patients that had my condition or a similar condition. I hope I can offer others my perspective on my journey and what to potentially look out for, how to deal with it, and what to expect. Hopefully, this information can reach appropriate people that are experiencing what I did and can enable them to get proper treatment sooner. The most important thing is be confident in your body and to continue to seek medical advice and testing until you have an answer. I strongly recommend keeping a symptom diary to share with your doctor.

Case Study:

History: 27 yo female, asthma, allergies (environmental-especially trees, eggs, medications-sulfa, illin's, clindaymycin), anemia (under control of supplements), history of orthopedic surgeries; otherwise healthy, active female. Strep as a child 1-2x only and treated successfully with antibiotics. No ear tubes. History of MRSA in left lower leg 2007.

December 2011: Diagnosed with Mono (symptoms included: sore throat, swollen tonsils, swollen lymph nodes, fatigue, initial fever, upper left quadrant pain (thought to be spleen pain), increased heart rate). Had mono symptoms, but continued to work for approximately 3-4 months.

April 2012 admitted to hospital for difficulty breathing/asthma after already seeing primary care physician regarding asthma and being put back on old asthma medications and prednisone. Chest X-Ray taken and ruled out pulmonary embolism (PE). IV steroids given at hospital. Also newly diagnosed with anaphylactic allergy to shrimp. Continued fatigue.

Summer 2012: 3-4 episodes of increased asthma symptoms warranting use of prednisone and continued use of nebulizer. Continued to be fatigued and awoke some mornings with sore throat or slight bloody mucus (thought to be from dry air), but otherwise no other signs/symptoms of Mono/Strep/other infection.

August/September 2012: Swelling  in neck lymph nodes followed by swelling of tonsils (L>R), white spots on tonsils, difficulty swallowing, throat pain, increased fatigue. Tested positive for actue ebstein-barr virus (MONO/EBV) in August. Began to feel more like self by mid August.

Mid-September 2012: Moved to different city and had to wait for new insurance, continued to have throat pain, fatigue, upper left quadrant pain, began to have intermittent joint stiffness in fingers, hips, elbows, thumbs, began to have flushed face, intermittent low grade fever.

September 2012-November 2012: Began to have itchy butterfly rash on neck and cheeks, extreme fatigue, intermittent throat pain, hoarsness without pain, swollen lymph nodes, intermittent joint stiffness, headaches, visual changes (blurriness, spots), rare heart mumur. October saw urgent care when unable to see primary care physician (PCP) and was referred to ER for enlarged spleen with throat pain. Believed to be flare up of mono. Released from ER with instructions to follow up with PCP given no information or new diagnosis.

November 2012: Swelling in tonsils and lymph nodes increase, low grade fever. Unable to see PCP, returned to same urgent care. Diagnosed with acute pharyngitis and given azithromycin. Took full dose of azithromycin, had diarrhea duration of medication usage, presence of small hives.

December 2012: Continued to have butterfly itchy rash every few weeks for a few days. Took prednisone on own and helped to decrease symptoms. Continued to have extreme fatigue, intermittent headaches, joint pain, intermittent mild sore throat, intermittent nose bleeds, intermittent nausea, rare gastric reflux, hoarsness, even brittle hair. Saw endocrinology and rheumotology and tested for connective tissue diseases, lyme, lupus, thyroid function, liver function, kidney function. All tests negative. Rash was present for appointments, advised to wait for results and also advised to see dermatology, ENT, and allergy again. Went to Dentist after appointments for routine cleaning. 3 days post-cleaning awoke with extreme swelling in left side of neck and face, difficulty swallowing, throat pain, low grade fever, increased itchiness, headache, upset stomach. Unable to be seen by PCP and went to urgent care. Rapid strep, rapid mono negative, given medrol pack. 5 days later received phone call from urgent care with diagnosis of "rare strep with scarlet fever," given doxcycline for 10 days. 4-5days into medication rash, swelling, pain, began to subside. Approximately 5-6 days after diagnosis, got the flu as diagnosed by PCP.

January 2013: Return of itchy rash, increased fatigue, joint pain, nausea, etc. Also intermittent increase in difficulty breathing. Awoke one morning with increased butterfly rash with no relief from prednisone, low grade fever, lymph node and tonsil swelling (L>R). Unable to see PCP, returned to urgent care. Explained was tested for lupus, returned negative, symptoms occurred just the same as when diagnosed with scarlet fever, requested prednisone and antibiotics. Rapid strep negative. Given a "fold and hold" script for doxycycline, filled on own anyways. 3-4 days later received call from urgent care and diagnosed with, "rare form of strep, strep G." Advised to see infectious disease, advised may need to be desensitized to more effective antibiotic, need to see ENT. Confirmed with first urgent care from December, strep was strep G. Called endocrinology, rheumotology, PCP to advise of second positive strep G. Put on levaquin and referred to PCP. PCP suggested tonsillectomry, explained did not see an abscess on tonsils or throat.

February 2013: At end of levaquin use increase in symptoms returned within 36 hours. Took remaining doxycycline. Without antibiotics for 24 hours when saw ENT. Continued to have increase in rash, sore throat, all other symptoms, including increase in nausea and increase in symptomatic days and severity of symptoms. Consulted with ENT who advised tonsillectomy ASAP and put on levaquin until surgery date (approximately 2 weeks later).

February-March 2013: Continued to have persistent butterfly rash, nausea, fatigue, itchiness, drowsiness, increased joint pain, and decreased urine output. Leading up to surgery could only work part time due to symptoms. After approximately additional 12 days of levaquin began to have increased nausea, hip and thumb joint pain to the point was unable to walk, extreme fatigue, still had rash and itchiness, also green stool. Stopped levaquin. Few days later had outpatient tonsillectomy where an abscess was also found.